From Therapist to Caregiver

Many of you know that I spent two months (February and March) in Philadelphia with a young girl from Haiti. During these two months, I went from the role of therapist to the role of caregiver. Caila received scoliosis surgery in late July 2014. We traveled back to Philadelphia for her to receive inpatient and outpatient therapy services at Shriner’s Children’s Hospital. Near the end of the two months, I wrote the following….

One cannot truly sympathize or empathize with another until she has had a similar experience. I always knew that being the parent/caregiver of a child with special needs is exhausting (obviously being a parent/caregiver in general is exhausting). I have seen the tired faces, the frustrated faces, and sometimes the hopeless faces on many parents over the years as a therapist. I have had multiple conversations with parents about the difficulties they experience on a daily basis. But it was not until this experience that I had a slight glimpse into the everyday life of someone caring for a child with special needs. Only now do I have somewhat of an understanding of all those parents I have interacted with for so many years. I will be the first one to tell you, it is exhausting…and sometimes a downright challenge.

From the "home exercise" struggle to the "you have to wear your orthotics" struggle to the "stay on a schedule struggle" to the "yes, you have more therapy" struggle to the “it’s 3am…and I am exhausted…what do you need” struggle, etc., etc., etc. I definitely get it now...to a certain extent. I was only serving as the caregiver for 2 months...caregivers of children with special needs do not have a 2-month limit on the day in and day out struggles. I understand the days of exhaustion. I understand the days of feeling discouraged. I understand the days of feeling defeated. I understand the days of feeling alone. I got a glimpse into the world that these parents experience all day, every day for the child's entire life.

At the same time, I experienced firsthand all the triumphs and pleasures that come along with caring for a child with special needs. As I watched Caila overcome so many obstacles, my heart smiled. Her ability to keep pushing forward through exhaustion, frustration, sadness, etc. was purely heartwarming to witness. The feeling a parent must feel each time they witness his/her child overcome obstacles must be of pure joy – something that just cannot be put into words. A child with special needs achieving a milestone is a little slice of heaven on earth. I now understand this from two perspectives – the therapist’s and the caregiver’s. That little slice of heaven is what kept me going in Philadelphia – all the struggles were nothing compared to the pure joy that always followed as I watched Caila during her therapy sessions.

Parents/caregivers of children with special needs have a full time job plus over time. They deserve to know…and therapy friends, don’t kill me for saying…but they deserve to know, that it is OKAY to miss a day of the “home exercise program” and it is OKAY to miss a day of wearing orthotics and it is OKAY to cancel a session of therapy just for a break, and etc. It is OKAY to not fully abide by the therapist’s recommendations 100% 24/7….this is simply not realistic. Superheroes need a break every once in awhile…and these parents/caregivers are definitely superheroes in my eyes. Now, when a parent says, “we didn’t do the exercises one or two days or a week”, I can now sympathize with them instead of jumping on the “frustration” train.

I am confident that I can now fulfill my job as a therapist with a lot more compassion for everyone involved. God has blessed me by opening my eyes and my heart to develop a little more understanding of the parent/caregiver role…and I will forever be grateful.